Editor’s Note: Frankie Campling has experienced CFS since 1989 following major surgery, and by the end of that year she had given up working. She became part of the “Listening Ear” service in the UK, which provides telephone support and counseling to CFS patients. Campling is the co-author (with Michael Sharpe) of a factual information book, called Chronic Fatigue Syndrome (CFS/ME): The Facts, just published by Oxford University Press, and which will shortly be reviewed by ImmuneSupport.
If you take a long hard look at exactly what you are doing and how you are doing it, it’s usually possible to see ways in which you could save energy, make things a little easier and so achieve a better quality of life. Each person is unique; there are no rules that can be applied to everyone. However there are some general guidelines that individuals can adapt to their own circumstances.
I have to confess that I’ve stolen these ideas from my sister. She is a management consultant and wrote a book with this title about coping better in the stressful world of modern business life. Reading it nudged me into thinking about managing the fatigue element of CFIDS in the same sort of way. After all, I was a business woman before I became ill and I can be business like about my illness.
A good place to start is by considering your activities, mental as well as physical, under the headings of ‘what’, ‘why’, ‘how’ and ‘when’.
What are you doing?
To begin with, are you exactly certain what you are doing? I know that a lot of the time I used to do things on automatic pilot without really monitoring my activities. If you keep a diary for a few days in which you record exactly what you are doing, it will often show up patterns of activities that are a bit wasteful of energy or unnecessarily tiring. This will give you some basic data to use on the next stages.
Why are you doing what you do?
It is certainly worth thinking about why you are doing anything. Is it because it’s essential or pleasurable or is it because you’ve always done it? Yesterday’s reasoning may not suit today’s circumstances. I can see that I used to be stuck in the “a good person always does such and such” and the “I’ve always done such and such in that way” kind of thinking. I certainly was too perfectionist? Change is possible, even though it may not be easy. Thinking about priorities pays dividends. Your condition may be so severe that just surviving is a battle, but if you are lucky enough to have a bit of spare capacity, then planning how to use it most wisely is important. Could you cut out some of the inessentials and stick to what really matters to you?
How are you doing things?
When you know what you are doing and have decided which things you really do want or need to do, you can move on to thinking about how you do them? Try imagining that you had a time and motion study expert following you round and observing all you do. What suggestions might such an expert might?
Could you simplify things a bit? To give an example, I looked at all the ornaments on my shelves and decided to put most of them away in a cupboard for the time being. That made it easier to dust. I’ve extended this minimalism to other areas with great advantage.
Could you re-structure things a bit? I thought about my kitchen and then got my husband to reorganize my cupboards for me so that the things I use often are all in the same area and at a height that is easy to reach. I invested in some gadgets to make life easier and duplicated some things (like an electric kettle upstairs so that I can fill a hot water bottle without having to go down to the kitchen).
I try to think before I do something so that I do it in the most labor saving way. I aim to plan ahead so that I make only one trip instead of two, even if it is just going from one room to another. Being organized and making lists can make a real difference. I have tried to get into the habit of always putting things away in the same place so that I don’t waste energy looking for things. That, I may say, came hard. (When my son was little, his games of pretending to be driving a car always started by him rushing round the house saying “where the hell are my car keys?” I wonder where he got that from?)
Small savings add up. If you could save a bit of energy on the essentials, you could use it for something you enjoy.
Planning out when you do things is important too. Spreading out your activities during the day and during the week will often mean that you can do a bit more without having to pay too much for having done it. For instance, just breaking things down into much smaller bites with intervals of rest between them might actually enable you to do that bit more or to feel less tired. There is no law that says that just because you have started something, you have to finish it right away. Try to schedule the more tiring activities with at least a day or so between them.
Another area to consider is that of communication. Poor communication is a major source of stress and distress, which in itself is very tiring. Working out the simplest, easiest way of getting a message across really pays dividends. Over the years I have built up an anthology of good ways of explaining CFIDS and the way it affects me. I try to decide whether it really matters if a particular person understands my illness. If it doesn’t, then I won’t waste time and energy bothering with explanations. Within the family, I aim for negotiation rather than confrontation.
I find that it helps me if I think about my energy in financial terms, like managing on a small and unreliable income. I can’t afford to fritter away any money/energy on inessentials. Pleasure though is something that I don’t think of as inessential. I need some pleasure and satisfaction in my life. I don’t allow myself to feel guilty about that or put up with any one else suggesting that I should be concentrating on what they consider to be essential. If I can make economies in my day to day living, I have more to spend on enjoying myself.
Do you think that you could see ways in which you could manage your own energy budget a little better? Being frugal could mean that you have more to spend on having some fun.
(c) Frankie Campling 2001